Radiation January 2019
Comments
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Dear Salamandra, I am fascinated by the concept of parrhesia as well. It is stressed by Michel Foucault during his studies on the ethics of self in ancient Greece. There is no need for you to be unsettled at all
Oncotype is superior to ki67 score. It tests the tumor’s activity on a genomic level. I am so happy for you; you were among the very few that really did not need chemo with a score of 9. Wonderful I was gonna try my chances in these genomic tests as well, but my decision to do one round of IVF to freeze embryos on my %100 estrogen positive tumor right after surgery (the long term consequences of doing so with regards to recurrence rates by estrogen positive bcs under 40 are still understudied - there is a study to be concluded in June 2020), I was convinced to accept at least the moderate 4 rounds of chemo to be on the safe side. If I haven’t done IVF, I would definitely go for an oncotype or mamaprint score and if low, I would not go through chemo as well, since it was not an easy pill to swallow. Thank you Dani444 for the tip
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Salamandra, mine was 1.3, grade 2, oncotype 13 and they also told me chemo would not be beneficial. I think when there's an oncotype score that does tend to dominate the decision making, though some MOs do tend to add chemo in sooner for younger people. I'm 41, which my doctors have still considered to be on the young side for this.
DeeDee, I'm so sorry you're so miserable. That sounds absolutely awful.
My chest and shoulder are tightening up, so I guess I need to do more stretching until I get through RADS. Just when I thought I was finally getting normal range of motion back. Thanks for the reminders about hydration. I'm working on it, but it gets complicated in a job that doesn't have easy bathroom access.
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Yay, I am done 👏 I can't believe that the day has finally come, the daily sessions are now a memory. I'm super excited for the weekend when I get to celebrate.
DeeDee - I am so sorry that you are in pain but I appreciate you sharing your story. I have had sunburn, blistered and peeling skin before. BUT I agree 100% with you - the blisters and peeling that I have now (and I'm sure it will get worse over the next couple of days) is nothing like sunburn. I too agree that the pain/ discomfort is worth it and I'm glad that I had radiation treatment.
Stay positive and take it one day at a time. Sending positive thoughts to you all.
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whohoo TC73 ! Congrats on your completion 🙌
Dee Dee I am sorry you are so sore. Thank you for sharing your experience.
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TC73, congrats!!
OTMom and Parhessia, thank you for helping me think it through a little deeper.
I actually did the drugs for egg freezing as well, a couple of years ago. Before my diagnosis - when I knew I was getting older, really thought I wanted children but wouldn't be able to afford it for a while and was still hoping to find a partner. I had a low dose but I cycled through many times (because of low AMH levels, it took me so many extractions just to get a lower than recommended number of eggs). I have wondered if that contributed. My oncologist seemed dismissive of that idea, though I don't remember if it was more like a 'probably not' or more like a 'we don't really know and it doesn't matter at this stage anyway'.
Ironically I still haven't found a partner, now I'll be on tamoxifen for years and a pregnancy would be even higher risk, and I'm more on the fence about having children than ever. Still paying for the egg storage for eggs that I don't even if if they'll work or not even if I decide I want them. Sign...
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Congratulations, TC73!!!!! Hope you heal quickly! I'm sorry you are having peeling and blistering too. Sending gentle hugs your way!!
I think I may be improving!!! Woo-hoo!! Last night, I decided would need to go get everything checked out in the morning. I was still getting worse. But, when I woke up this morning, the area with blistering was smaller. I'm sooooo relieved. I guess it just really does take time. I had been getting progressively worse every day. But, here I am, a week later, and now things are slowly starting to improve. I'm just happy to have good news!!! I was feeling I couldn't take it anymore. . . and then things started to heal. I'm not 100% better. But, I can see improvement. I'll take it!
Sending best wishes to everyone!!
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TC73, congrats on being done!
DeeDee, I'm so glad you're finally seeing signs of improvement.
Salamandra and Parrhesia, trying to make decisions about having children along with all of this is really hard. I'm sorry that there's an extra layer of complication to this for you.
Fatigue hit hard today and I ended up taking the day off. I never do that and had to fight the part of me that felt like an enormous slacker for doing so. But I was fighting tears trying to get myself out the door and then as I stood at the end of the driveway talking to our neighbor I realized that the longer I stood there, the more dizzy and nauseous I felt just from the effort of standing. So I let the tired win for today and hopefully after the weekend things will be better. I still felt pretty dizzy and weird driving to and from radiation this afternoon, so it was the right call. I just don't like it. I've been pushing hard to limit the number of hours I have to take off and to try to keep my productivity at an acceptable level, but I'm going to have to let go of that and just get through the next couple of weeks.
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OTMom,
Sounds like a rough day for you. Rad fatigue is real, glad you are giving yourself some time off of work. That's not being a failure, that's realizing that your body is under heavy stress and needs rest.
Maybe a friend or relative or Uber/Lyft could get you to and from you appointments for awhile?
Take care and keep us posted.
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Finished up week one and celebrated with Starbucks. Does anyone else treat yourself when you finish each week? I def seem more tired this week and I'm ready for bed by 830 each night but I keep thinking it's too early for RADS fatigue after just one week?
OTMom: I'm so sorry you are feeling the exhaustion but I'm so glad you listened to your body and took time to rest today
Misha: I'm sure your kiddos miss you and can't wait to have you back. I was gone Thanksgiving till after Christmas and everytime I'm out for an appt the next day my students say " you're back" like they expect me to be gone forever again
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Hi Jen2Mom,
We had Cocoa Thursday every week after the visit with the radiation doc. It was really something to look forward to! Then just one more zap and done for the week. Hey whatever gets you through.
You certainly could be tired after one week. You're physically doing more by going in for treatment every day. There is also a psychological component of fatigue, where there is just so much going on it's overwhelming. The stress of that can feel like fatigue. We need to rest during this difficult time.
That's sweet how your students greet you!
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I do the Friday Starbucks reward to myself too. Since the hospital has a Starbucks right next to the oncology dept, I'm tempted every day but so far I've managed to hold out until Friday's.
Congrats to all of you who have crossed the finish line. Let The Healing Begin! I'm so looking forward to that and keeping my eye on the prize.
Radiation seems to be the gift that keeps on giving. Lots of odd little symptoms that just keep you guessing and slightly off kilter. I'm just starting to see signs of the dreaded rash creeping up my collar bone. The zingers, zips, zaps, zigs & zags like to surprise me at the most inopportune times. Today I was reaching for a gallon of milk in the Safeway when one of those crazy zingers totally caught me off guard. I almost dropped the milk and I made a little squeak. The guy next to me looked at me like I was crazy. Shoulder pains, weird arm sensations, numb areas that somehow manage to hurt or itch and, whatever other little trick my body decides to play on me. For a couple of days now, my sternum has been very painful. I asked my RO and he said the rads can inflame the joints where your ribs connect to the sternum. Today I have an oblong, fluid filled, very swollen area over my sternum. I looked in the mirror and just thought, hmmm, that one's interesting. Just another one of those little items that no one tells you about. I think they don't tell us these thing because there's just too many of them to cover and everyone gets a completely different grab bag of tricks to deal with. It's probably easier for them to deal with each of our concerns when/if they show up. All these odd happenings are still better than cancer and they're only temporary. Can't wait to see what little trick I'll be surprised with when I wake up tomorrow morning.
Good night everyone and Stay Strong!
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DeeDeeT, when I read your post I felt like someone who knew my pain! I have had a really tough time. I completed 25 full breast/node treatments on Monday and had 2 boosts. Yesterday I went to my MO and she was clearly in shock when she saw my neck and underarm. She was going to get me started on AIs, but after seeing my skin condition she said absolutely not. She called one of her RO colleagues to ask what she could recommend to help my skin condition. She also had the RO RN come talk with me and bring me more samples of of Radoaplex HA, calendula cream. All were really shocked at how badly my skin looked. I told her I wanted to stop the boosts for now and she didn't discourage me. I didn't go yesterday or today. I let the techs know I wasn't going to make it and this morning the RO called me to ask what was going on. I was honest and told him my quality of life stunk and I was getting depressed. I have blistered and weeping sores by my left collarbone that hurt every time I turn my head. I have blisters under my black underarm. My entire breast is red red. He was kind and told me he was sorry that they went so far without understanding He how bad it was for me. I let him know I wouldn’t be back for a while
So I am holed up wearing tank tops in my house when it’s 35 outside and my dogs even think I’m crazy. Im sorry I’m not the poster child for no side effects. He asked if I would come into office a week from today to check in and see if I had made some improvements. Gosh let’s please pray for healing for all of us!
So yes I know where you are and how it feels I’m waiting for the heat from my skin to cool and give more a break. I don’t know if I’ll go back and finisH the last 6 boosts. I just want to heal.
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Oh Joytx, I'm so sorry!! I was able to finish before mine got to that point. I hurt for you!! I am very glad they are giving you a break. I only did 16 +4 boosts and ended up crispy, so I just can't imagine. . .I think that if you are going to burn, you may REALLY burn. I hate it that you are going through this and hope you heal quickly. Aquaphor has helped me the most, but I can't use the antibiotic creams because of allergies, so they may be better.
My husband was reminding me last night about my initial consult. They told me I may react like a "mild sunburn." He said, "they should have told you that you may look like you fell into a campfire! " At this point, we both just had to laugh. It was that or cry. But the doctors did not prepare me for this.
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Jen2Mom, I love the idea of a celebration at the end of each week. We've got to find things to celebrate in this. I definitely felt tired in the first week, but it was hard to tell what was from rads, what was from life, and what was the emotional toll of all of this. But it's totally reasonable to feel tired at any time and to take a break and rest when you need it. (saying that out loud so that I can hear it and work on listening to that as well)
Egregious, unfortunately my job also involves a lot of driving (I do early intervention, so it's all home/daycare visits and driving all over to get from one to the next) so I need to find a way to be OK for all of it or just decide to take some unpaid time off. I'm hoping resting this weekend will help. I'm also constantly fighting off germs, since everyone I work with is sick at this time of year. Usually my immune system is pretty fierce, but all of the physical stress of surgery and treatment has made it harder to fight stuff off, so I got really sick in late December and feel like I'm constantly fighting a low grade cold right now. Not enough to make me full blown sick. Just enough to add to the fatigue.
So sorry to hear about the miserable skin reactions people are having. That's one area where I have been lucky so far. I have some itching and soreness and tightening of muscles, but nothing major. I'm so sorry so many of you are going through that level of misery. Joytxs, I hope that with a break and some new topical treatments you start to feel better. Was your RO checking in with you during treatment? How could they have not known how bad it was? That doesn't sound right to me. I hope you get some relief.
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Joy- I am so sorry you are having such bad SE's. That sounds really miserable. I hope you feel some improvement soon. I am glad they are giving you a break, and it sounds like your providers are being supportive. I hope you have a restful weekend.
Faceforward- Yes to the numb areas itching. It becomes maddening, and I still cannot figure out how it is possible. I am numb in an area on my back just past my armpit and it drives me crazy when it itches.
DeeDeeT- It seems we do get our SE's minimized sometimes, and that it frustrating. I laughed when I read what your husband said. It was perfect.
I am still seeing skin improvements , but I think I over did it at work. My chest wall muscle has felt tighter. I have been trying to stretch it out. I just thought I would give it a try at going full force and it was too soon. I feel very fatigued today and trying to muster up the energy to be excited about meeting with friends later. I hope everyone can enjoy their weekend break
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Hey all,
I started feeling some sort of muscle tightness in my cancer-side elbow and upper arm. The numbness/nerviness is still a little there from the lumpectomy, but this felt new. I reached up for something and was like, 'whoah.'
I finished radiation almost 3 weeks ago now. Could it be related? Is this possible LE, or am I just freaking myself out and should take some advil and stretch it? AGH.
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Salamandra, my tightness has come back a bit too. It’s not as bad as it was after the SNB, but it was almost gone before I started radiation so it is a bit alarming to have it come back. Stretching helps.
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Geez Joy, that is awful! I am so sorry that you are hurting like that. It seems crazy that they didn't keep a better eye on that. It sounds miserable. I hope the tank tops and weekend help you to recover and you find some comfort.
I don't know why doctors minimize se. It is really frustrating. I keep think about my PS saying that my pain was phantom pain and that I should touch the painful areas and tell myself that I don't hurt as to retrain my brain. It really makes me depressed. My incision lines from LICAP flap are throbbing after only 4 days of radiation. My breast still has a blackish blue hue from surgery that was 8 weeks ago. I am worried because it hurt befire radation. Trying to take it one day at a time.
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joy, so sorry to hear about your SE - I hope it gets better soon. I found some aloe Vera spray that is kept in the frig, and it feels so good to spray on that coolness. Maybe that would be helpful. (?) It really hurts to think about what you're going through.
Faceforward, I too feel weird sensations along the sternum and I'm hopeful it's not hitting my esophagus ...
I'm 9 treatments in & 16 to go, and feeling chest muscle tightness and some arm numbness around my elbow (weird), but so far my skin is holding up with the calendula cream & aloe Vera spray; aquphor at night. I can't sleep with this tissue expander ... it hurts all the time, and I wish everyday I'd just gone flat.
This Radiation treatment stuff is so unpredictable - I am astounded by the range of side effects that are reported here. Good luck everyone.
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I was told radiation would be like a sunburn, too, DeeDeeT!!! This is like no sunburn I have ever had. I kept telling the RO nurse that I was having what I thought were bad SEs especially to the underarm and the collarbone area. She said just keep using the aloe, Radiaplex and aquaphor. I saw the RO 1x week, too. Same thing, keep using products and last week they prescribed silvadene. Maybe they get so used to seeing severe cases they become blind to those of us who are having "bad" cases. I'm sure there are worse than mine, but I've never experienced anything like this. I told the RO yesterday when he called that this was the worse part of the entire experience. I hurt, I'm depressed, and I'm alone in this except for you all. I know it will get better eventually. But today and the last week - It. Has. Sucked.
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Hey Salamandra - my RO said to expect muscle tightness for potentially several months after rads are over. I've been doing gentle shoulder, chest, and neck stretches every morning to help. Radiation shrinks muscle, and when it grows back it can feel tight. If we make an unusual movement it can be suddenly painful. Nothing grim, just need to keep up with gentle stretches and pain meds as needed.
Joy - we all feel for you! You've had a very rough time of it! ((((gentle group hug)))) We care how you are doing. Please keep us posted.
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You may have slight cording. I practiced yoga and continued gentle stretches after healed from lumpectomy and throughout radiation daily. It prevents cording. If you have cording and it becomes a real problem, physical therapy will relieve it but they will break those cords. I don't know why this isn't discussed by many doctors. I just happened to research on yoga and breast caner treatment in 2012 and found the exercises that I was already doing. Be gentle with yourself. I would start today. Our motto- No Pain No Pain
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Thank you so much for the info!! I feel a lot better now. I will try to be conscientious about stretching it for a while.
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My heart goes out to all of you who are hurting so badly. I'm so sorry you're having such difficult side effects. Sending lots of peaceful, healing thoughts and hoping this week is better for you.
Today, my sentinel node scar feels like there's a giant fish hook in it and every few minutes somebody starts reeling me in. I don't know how there can be such an extreme pulling sensation when I'm not even moving. I've been faithfully doing my stretches but now wondering if I'm doing them too much? or maybe not enough? It's impossible to tell what's right or wrong. Like others here, I'm having shoulder, elbow & arm issues. My sternum is still extremely sore and has a definite swollen little squishy balloon over it. I was hoping that would go away over the weekend. And now I have one of those little balloons in my armpit above my nodes scar. That makes me think that both might be lymph node related. Today, I've added cortisone to my routine to help with my growing rash.
At first, I was just carrying a tube of Miaderm in my purse. Then I graduated to a little ditty bag to carry multiple lotions and some cleansing cloths (to remove all those lotions before rads). Then I switched to one a little larger so I could fit a piece of fleece material that I fashioned into a little snap-on protector thingy that I can put on when I'm feeling extra tender. At this rate, by the time this is all done, I'll be hauling an entire duffle bag around with me. Sigh...
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Hello, thinking of everyone as you start another week of treatments. I am 12 days out from the chest wall/nodes tx's and its been 5 days since the final boost tx. The fatigue has seemed to kick back in and I had really felt it was lifting. I am dragging at work and find it hard to concentrate and multi task as well as I used to. This to shall pass, right?? My skin is still looking better everyday. The area that had boosts is a little more pink since yesterday but nothing bad. Anyone else noticed new lumps? I have two lumps in my upper chest, and several on my side. The ones on my side are painful upon palpation and I think it is way too low to be lymph nodes. I am thinking just changing scar tissue? My side has been the biggest pain (literally) since my mastectomy anyway.
FaceForward- Have you had a consult with physical therapy? Maybe you could ask your RO for a referral. My PT was able to give me some specific stretches when I told her exactly what muscles were giving me fits. I hope you don't need to graduate to the duffle bag for your products!
Joy- I have been thinking of you. Are you getting any improvement since taking a break and using the silvadene? I just hate it that you are having such rough SE's. This process is so mentally draining in the first place I feel for you dealing with this. Definitely sending healing thoughts your way. Hang in there, and you are right. ALL of this just sucks.
H8BC- Sorry your tissue expander is being a pain! We seem to have similar stats. I found my chest wall muscle pretty tight at times during rads, it does get tiresome. How far out from rads do you have to be to get your exchange?
Salamandra- Did you consult with an LE theapist before rads for baseline measurements? I couldn't remember if you had done PT or not? I swear I feel like they sucked out my brain power during rads! I can't remember crap these days. I see you are feeling a bit better, so that is good.
egregious, Thanks for sharing about what your RO said about the tightness lasting. It is so crazy how different the information is from one RO to another. It seems I have learned more here in regards to SE's and how to manage them.
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Dani444, thank you for your sweet thoughts. I am improving every day and today the pain was significantly better. It does take time and I do feel some relief. The skin is starting to dry and the silvadene is key to that. What has your RO said about the lumps? I’m sending healing thoughts back to you for renewed energy and skin returning to normal.
I’ve been locked in my house since last Thursday and I’m going to try to get dressed and go to work tomorrow. I’ve felt some tightness in my chest and I’ve been stretching a lot to help.
Sending good thoughts for all of you back at RADS this week
One day at a time...
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Joy - we're rooting for you. Take care and keep us posted.
People continuing into February:
It would be great for those starting or continuing rads in February to have their own post. It's super easy to start one.
Go up to where it says Forum: Radiation Therapy - Before, During, and After, click on that, and there's a giant red button "Start a new topic".
Create a new name like Radiation February 2019 and write whatever you want to welcome the Feb people.
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hello To all,
I just read through the thread and I wanted to pop in and say hello. I’m joining this group as I had My first round of radiation today. It was supposed to be yesterday, but the machine wasn’t working. I live in the Chicagoland area and we been slammed with some super serious weather Recently which can affect the machine- not sure what they call it
Crazy cancer journey getting used to the new normal here which is each day. Reading about all the undisclosed side effects is making me a little nervous. I too was told it would be like a sunburn. Also I have A pretty hefty treatment plan 28 treatments +5 boosts.
I’m still suffering from some neuropathy from my chemo. Scared of more pain. In any case this is not a place of fear it is a place of support so as I said I’m stopping in to learn from your expertise. Can anyone recommend some good additional lotions? I do have sensitive skin but no formal allergies. Any other must have us to get through to the other side?
Thank you
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Welcome M-and-M37! Hope you find the support and encouragement that so many of us have discovered here. Your first treatment is by far the longest, then just a few minutes each after that. Bring moisturizer with you and apply after the radiation treatment as you are getting dressed. That plus morning and evening should be enough. (Avoid putting on within two hours before your radiation)
Since I didn't have chemo I can't compare with rads but the procedure itself doesn't hurt, and usually the side effects of sunburn and fatigue come on very slowly. Many people have very few side effects in the first couple of weeks. Being in the radiation room alone is a little unnerving but if you need them to stop just call out and they'll help you.
Lots of good fragrance-free moisturizers out there. My docs gave this list: eucerin, lubriderm, cetaphil, calendula, aquaphor, cerave. More $ but works well is miaderm and miadermL that has lidocaine in it, available on amazon. For when you start getting red and itchy, get a spray bottle of 100% aloe vera (Seven Minerals for example - amazon) and leave it in the fridge. It's good for a couple months and gives *instant* relief.
If you want to display your diagnosis and treatment below your posts, go up to the top of the page where it says My Profile, then click on Diagnosis or Treatment to get started. I may have had to go to the blue stuff on the left where it says Settings to make sure these were set to be public.
For a boatload of good advice, read from the beginning of this January thread and even some of the other monthly radiation threads to see what has helped other people. You will get through this! Good luck and keep us posted.
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good idea egregious 😊 I started one
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